Dear Hollywood, and the people who live by her rules…
Two and a half years ago, this happened.
TL/DR I began life as the single parent of a child with multiple challenges and an abiding attachment to his very unique life.
As a family, we had responded to our son’s challenges differently to most. While the pressure was on to ‘normalize’ him through behavioural therapies, to ‘teach’ him all the skills that weren’t naturally emerging from his life experience, we took a step back. We built a world where he was safe.
A quick Cook’s tour of my kid. When I was pregnant, I went to see Pirates of the Caribbean. God knows why, because it was shit. But I was pregnant, it was hot and I needed to sit down.
Every time pirate swords clashed, my shirt flew into the air with such force, people around me laughed. When my son was born, a coffee cup placed on a hard surface near him would make him startle so hard he would bruise his tiny limbs on the edges of his cot. (The midwives in the hospital got a massive amount of giggles out of what they called ‘his party trick’. They didn’t laugh so much at his lack of ability to feed or the resulting jaundice, but that’s another story).
The first time he went to a playgroup, and another baby screamed, my son reacted with what can only be described as a baby panic attack — streaming eyes, silent cries and the saddest sweaty stress rash across his forehead you can imagine.
Suffice to say, sudden sound and my son are not friends. And in case you hadn’t noticed, the world is full of sudden sound.
It took a while, and an alphabet of diagnoses to understand what was going on. In essence, his ears, while genetically sizable, are structurally flawed. Add to that internal vulnerability, a condition called Transverse Myelitis, which ripped through his central nervous system at three and a half, and you have a kid for whom normal life is run through Spinal Tap’s amp. With added (not metal related) pain.
Unsurprisingly, because of this, life can be challenging for him. He experiences physical pain when he hears sounds that might give the rest of us mild irritation as worst. He is undone by yelling or crying kids, random barking dogs, roosters, sneezes and coughs (I should re-order this list because now my head is full of roosters with head colds…).
He feels physical pain from the structural abnormalities and nerve damage (a total lack of protection from his startle reflex coupled with nerves that do not trigger the protective ligament/bone movement that protects the rest of us). Think, that crying baby on the plane is also hitting your head with the blunt side of an axe.
Obviously, after thirteen and a bit years of dealing with this, there’s an emotional/behavioural cycle involved too. Despite this, and his other medical conditions, 95% of the time, my child is the Dalai Lama. He is calm, sweet, funny and likes to wear monks’ robes. OK, I made that last bit up.
So, cut back to two and a half years ago, I’m single in one of the world’s most expensive cities, with a child who requires full time care both medically and educationally, with vestigial professional skills in an industry based principally in said gobsmackingly expensive city, with little care support for said child outside of my former partner who is still apparently wrestling his own medical demons from a foetal position on the floor.
Why aren’t family leaping in to help, you ask? Do you have three weeks and a case of vodka?, I reply.
In short, because some live far away, because some have their own serious shit to fry, because some don’t agree with our child rearing choices and because some purely and simply have no heart.
The first two reasons I can totally understand. The third disappoints me but whatever. The last is, in my opinion, unforgivable.
Call me crazy, but to me, children come first.
My response has been to innovate in the creation of the safe world my son functions best in. His father has chosen to retreat to arms length, fully supporting the theory, but choosing to live largely by an alternate one.
I’d love to say it’s easy, and emotionally it almost is, but logistically it’s actually split-the-atom impossible.
I have a small number of amazing family members on both sides who have stepped in with unbelievable compassion. I have great friends who support me, listen to me and drink with me. I pay highly skilled people to rearrange my pieces, periodically. I have been fortunate enough to establish another relationship with someone who works harder than anyone should to accept the limitations my life choices present to intimacy and connection.
And yet, the space-time continuum refuses to provide more than 24 hours in a day. Science refuses to clone me, no matter how nicely I ask. The bank is downright confronting in its demands I supply it my cash on a regular basis.
Our days are a mix (a polite word for a Dante’s Inferno style maelstrom) of care, work, medical attention, hugs, meltdowns, laughs, fears, schoolwork, excuses, phone call avoidance, passion, escape and YouTube videos. If it wasn’t so terrifying, it would be a whacky movie trailer. Cue, Peter Gabriel’s Solisbury Hill.
Sadly, and despite Peter’s best efforts, it would be a trailer, and a movie, that at least 50% of my son’s family have no interest in seeing. Not even on cheap Tuesday. Not on DVD. Not even on YouTube. And this is a family who love nothing more than movies. Literally. They speak in Hollywood quotes.
So, here’s my attempt at a Braveheart-esque call to action. Maybe random people might pick up the message while eating their popcorn and pass it on.
This child who is one of us, is an immense human.
He has a pure heart. He has a giggle that can dissolve a room. He has 4TB of movies he has made about the things he loves.
He needs family because the world is overwhelming yet he wants in. He needs family because friends are hard to keep yet he wants them anyway. He needs family because we all do.
Disability is confronting, for sure. It’s tempting to deny its power but ultimately, as the grown ups, we just can’t. We didn’t necessarily choose this path but we are on it. With him. We share his journey whether we like the way it is going or not.
My son doesn’t see himself as anything less or more than any other human, even though many around him are confounded by his needs. He is, like all kids, constantly building his understanding of the world and his place in it. If nothing else, we just need to be there — to keep him company, to keep him safe, to keep him giggling.
Being there will involve one sacrifice from us — we must put his needs first, not instead of but ahead of our own. It’s different, but not impossible. I get that is confronting, but he doesn’t. And he shouldn’t.
As time goes on, I see that my only alternative is to find places, away from me, where my son is safe. Though he begs me to assure him that I will never go away, I have to. In the short term, that is so I can work, but in the fullness of time, that will be because I will very likely not outlive him. There is nothing more terrifying than that idea. Except maybe the prospect of another series of Game of Thrones.
I accept that my life is his life. I will be (deity-willing) that 80 year old woman walking along the street, hand in hand with a tall, uncoordinated middle aged man talking endlessly about why James appeared as a cameo in episode five of Season Three of Thomas and Friends.
I hope, at some intersection, that another family member might step in, take his hand and provide some train related intel, or something else to make him giggle.
Or maybe by then, there will be inexpensive robots, programmed with the wisdom required, endless compassionate listening chips and a comfy wheelchair for me attached.
Actually, give me a sec, there’s a movie in that.